MOHS - UK - NHS - A journey into the unknown

Tuesday

Well it's not totally sorted yet, but I have to say I am pleased with it. There is still a small scab at the end, and until all the scabbing is gone I'm not risking wearing make-up - I don't know whether it is possible but I have a horror of ending up with black scarring ;-). (I stabbed my leg with a pencil when I was a kid and I still have that black mark on my leg over 40 years on!).I went back to work, and have to say that was a very self conscious and slightly anxious day. People's reactions are very interesting, they range from 'you can hardly see anything' to 'it's better than your old nose' (;-). I am amazed at how quickly the scarring that has healed is fading, and I can see that it really won;t be long before I could feasibly cover it up with make-up - though I am strangely proud of it and the amazing skill that surgeon did. I don't dislike scars so that doesn't worry me unduly. As the feeling is slowly coming back in parts there are little jabs, and sometimes a feeling of crawling ants inside, but overall, I wish I had realised before that this was going to be the extent of it, and possibly even if I had had to have had a skin graft from my forehead, it would have healed really well as well. I have also realised that the man I love loves for me who I am and really doesn't seem to care one jot what I look like - that is a wonderful thing to know.I will have to sort out the date thing here, I wanted it to start at the top at the beginning and end with the final nose but it's all gone wrong. Will come back to that at some point.

Monday

Introduction

If you are reading this, probably either you or someone you know is affected by MOHS and are looking for answers. I'm not going to give step by step procedural details, I feel they have been covered in great depth online, and there are also a lot of images you can find if you look. What I couldn't find when I was looking was information on how anyone felt, having it done in the UK, on the NHS.There is a lot of information out there from people with private health (i.e. USA) who I feel have a very different experience to what us over in the UK have.So, in the posts that follow, I will try and cover how I eventually got to have my surgery, what I was feeling and eventually show the results.My name is Sue, I am 54, I stopped sun bathing or going out in the sun over 20 years ago. I teach and I make jewellery.If I was going to give any advice it would be:

Trust your instincts, if you think something is odd insist it is checked - I twice was told there was nothing, and both times there was.

Make sure you have a supply of strong painkillers for after

Know that local anaesthetic hurts!

Wear Sunscreen

Know that cauterisation smells bad!

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The Start of the Journey

Sometime last Summer, I noticed a little mole type thing on my nose, not particularly big, but not particularly beautiful either. Eventually I went to my local doctor.

My local doctor said she had no idea what it was, maybe this (scramble around some cupboard) 'squirt' - might work.

I asked her what if it didn't work, she was quite dismissive and said 'well they won't do anything for cosmetic reasons', making me feel a bit silly and not a little angry.

My boyfriend told me I had to go back and get a second opinion, which I did a couple of days later, and the second doctor agreed with my BF's diagnosis that it could be a BCC (basal cell carcinoma). She arranged an appointment with ear nose and throat (because dermatology's waiting list is so long)! Three months later I went to ENT, they weren't sure what it was and sent me to Dermatology - 8 weeks later.

Eventually last December (2011) I was seen at the Dermatology department. They asked if I would mind some students having a look, which was fine, and made another appointment for me to have a 'scrape'. I went back again just before Christmas for the scrape and that was the first time I ever heard the term MOHS.

The doctor explained what MOHS was and said they would make an appointment for me to go back and have the procedure. I have to say I was quite taken aback at how much was taken for the scrape. I also mentioned a tiny little spot on the end of my nose, but they said that was fine, nothing to worry about.

So that was that, I left the hospital with about a half inch wound on my nose which quickly scabbed over and looked very attractive for the festive season!

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Not a Care in the World

So, just to show you what we're talking about, here are a couple of photos, in the garden. You can see a slight scar / dip from where the scrape was taken on the side of the nose, half way up. If you look very carefully, you can just about see the tiny little spot on the tip.

-----------------------The Fear Sets In

So this, for me is where the story really starts.A couple of weeks ago it occurred to me that I didn't really know how long I'd need off work, I had thought a day or two originally. So when I got home from work, I started doing searches on the net. Up to that point I had only searched about basal cell carcinoma, never MOHS surgery. Freak out time.I think my first search term was 'recovery time MOHS surgery'.And then I did an image search and that was when my knees went to jelly. I was just so shocked. I have no recollection of being told any of that stuff. I remember very vaguely being told that they cut a little bit and sent it off for some tests and then they may have to do that again. There was talk I suppose of skin flaps, but I didn't take it in. I certainly did not understand what I had been told that's for sure.As I searched through all the pictures I just got more and more freaked out. Then I would get my hand mirror and look and think 'you are just being a drama queen' my little scar from the scrape was looking completely fine. There was still that tiny little pimple thing at the end of my nose however, that kept bleeding and then scabbing and then bleeding again, but hey, they had said that was fine.

So for about three weeks I would swing between being terrified and being cross with myself for being so silly. This is what I mean about a journey into the unknown. I told very few people, because when I did tell them I just sounded like the worst hypochondriac in the world. 'I have this little thing on my nose, that is completely cleared up and I'm worried I will end up having some huge hole in my nose that will need a skin graft from my forehead' - you could see the other person thinking 'mountain / molehill!!'

I told them at work that I thought I would need a few days off but wasn't really sure after that.

I spent the rest of the time until the day of the 'procedure' alternating between freaking out, like seriously freaking out, last thing at night, sobbing with my stomach churning, to thinking I was a complete idiot and it was gonna be nothing.

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The Day of the Procedure

So, for the last two or three weeks I have been really scared, like seriously fearful. Thinking back now trying to work out why, I can see that it was because I just had absolutely no idea what was going to happen. It could be nothing, it could be terrible, who would know until I had the op. I really cannot convey how the fear felt, I have never really felt like this before and I have done and had things done that have made me scared, but this was different. It was my face. Not only my face but my nose! What is the first thing you notice? nose then eyes!

As it turned out, there were five of us having the same procedure this day. The other four were in and out pretty quickly, each one having about 5 stitches.

So, blah blah, we went to the hospital, the fear subsided because we just went into the system and the system took over. Of course, the nurses, as they always are, were just the loveliest, nicest, kindest people in the world.

I went in at 8.30. I pointed out the little pimple thing on the end of my nose and once again was told no, it won't be anything, which is good because trying to reconstruct two is a lot more complicated (she said). But just by chance the surgeon did actually have a closer look with her magnifying glass. And then said, mm yes it is another one, bad luck two BCC's in one area. But they were probably going to leave it, because it would just complicate things. However they did take a small scrape at the same time as excising the original spot.Now this is something I hardly saw mentioned anywhere.The local anaesthetic is BLOODY PAINFUL! Seriously, everything else is a breeze, but be warned, that is the thing that sodding hurts like hell.I so wasn't prepared for that ;-) and throughout the day I had tons of it.Oh and another thing, the face being vascular, cuts needs cauterising - each and every time - the smell is not pleasant!So, as is already known, you have a scrape, it gets taken for investigation, you wait and then go back in either to patch up or take another sample. It seems to be about 2 hours between each session, so its a long boring day. As it turned out, my first one, the big one, was completely clear, they had gotten all of it with the scrape taken back in December. The bugger was the little pimple that turned out to be a nasty little one. Apparently quite aggressive and had spread, so had to go back in three times for that one.The whole day of going in and out was all done in good spirits, and in fact was quite amusing as the bandage on my nose got bigger and bigger.Then the last call in where they said they had got it all - good news (;-) and now was the time for patching up.Taken aback again by my reaction. She showed me a drawing of what they were going to do, effectively cut a big J shape around the outside and bottom of my nose and shift the skin around to cover the two holes. (I think). Freak time again.To be honest part of my freaking out again was to do with the fact that, I knew the person doing my surgery was a trainee and wasn't really that experienced. (This is where I say as Brits we tend to have a different experience to the US - I'm not sure it would be acceptable paying privately and having someone 'practise', but this is England and really there is no alternative. My mind was whirling with 'shall I demand I have the experienced one?' with 'what is going on'. Anyway, blah blah, trainee lady was watched at frequent periods by experienced surgeon. I can't say I appreciated the fact that trainee lady had to unstitch and redo three times, and I realise that my two hour procedure would probably have only taken about an hour with an experienced person doing it. I am not moaning, I accept this is the way it is, and everyone has to have a first time. So, about two hours and roughly 30 stitches later it was done.Finally at 4.45 we left the hospital. Just over 8 hours from the start, and me all bandaged up.What follows is the progression of the bruising and clearing as the days went by. The bandage comes off and the stitches come out next Wednesday, that could be another freak out time!

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1 day after - bruising coming out

2 days after - eye closing up

2 days after - eye needs a little help to see ;-)

I have to say up to this point, (although I have made sure I'm dosed up with pain killers), its been 'annoying' but not painful, not what I was expecting.

Day 4 - Swelling going down

Day 5 - change of dressing!

So, today (5 days after) I had the dressing changed. It's been leaking and quite frankly getting a bit smelly! (Thought it was the cats then realised it was following me!). I live very close to the hospital and they just changed it, asked if I was taking antibiotics (I presume it's gone a little bit manky), and dressed it with pink plasters!! The swelling is going down rapidly, I have to say I was getting quite used to the look.And this new look, not quite so striking but I'm sure I've seen a creature on Harry Potter with a nose like this!

1 week after:

Well I went and had the stitches out, well most of them, there appeared some kind of problem, think it had gotten a bit too scabby for the nurse to be able to take them all out, we counted up about 29, but she hadn't been able to get all of them. It's now dressed again until the weekend when I have to let the air at it - that will be my first view!

one week after and at least a slightly more humane looking dressing!

Dressing Off - Nose unveiled!

Spot the dog is alive and well! So I spent the whole day yesterday putting off taking off the dressing, but eventually I did it. Looked kinda nasty, some very unpleasant colours on it! And looking at the scab I started worrying that it had gone sceptic, as it was about an inch across of yellow liquify kinda stuff. But in the end, although they had said to keep it covered liberally in vaseline I thought I'd let it dry out a bit to see if it was puss or just a 'wet' scab. Turns out it was ok. I am staggered by how quickly some of the stitches have healed, yes ok it's still a bit pink but it is nothing like I was expecting.

I went to the Doctors to get a sick note, I am really sure I'm not ready to go back to work just yet, (I face people in a one to one situation daily - people who pay a lot of money to be there - doesn't really seem fair them having to look at this), and bless her heart she gave me one for 3 weeks, if I want more just to let her know.).

So anyway, yes the bottom resembles spot the dog and I get a shock each time I walk past the mirror but if it clears up like the rest has I'll be very happy.

Sunday

Well it's not going as fast as it was. When the dressings first came off it looked like it was going to heal in double quick time, but this end bit seems to have stopped in it's tracks a bit. I suppose it descends on how deep it is underneath. Whether or not it was going septic I have no idea, I was given antibiotic cream but that seems to make it worse and also made the scabbing start to crack so after a phone call to the hospital I have now stopped it, back to vaseline. Still seems a bit pussey to me though. So these pictures are 18 days after. Not so long I suppose. The funny thing is that the long scars down the side which seemed so pale to start seem to be getting darker red now, or maybe it's just my imagination. I do know for a fact now that I am horribly vain, and have hardly left the house, and when I do it's with Alan by my side! Back to see the doctor on Monday.

Update: (for Donna). 2014 and you can hardly tell it's there. There is a white scar, but that's getting smaller. Remember my nose was not straight to start with anyway. On my bad days I feel it looks a bit mangled, but when I am completely honest with myself I know that absolutely no-one notices. If I feel the need, I use a cover stick over the scar, but that happens less and less, and to be honest I just feel it is part of who I am.I avoid being out in the sun now, and on really sunny days will even take an umbrella to sit under for the midday sun. I will sit and feel the sun on my face late in the afternoon. I have got totally used to the pale and interesting English look rather than trying to keep a tanned look with make-up or whatever, my skin is what it is. Yes I loved being tanned (albeit with fake and make up) but I've just given that up. Oh yes the mangled bit is also because in January I went back thinking it had come back again, they took another biopsy, but it turned out fine, but that is yet another scar on scar on scar, my poor little nose has had more operations and stitches on it than the rest of my body put together. (stitches at 16 for a non heeling spot / two nose straightening jobs, biopsy stitches / mohs / another biopsy = pretty mangled little area on face - but as you can see - it really doesn't show). MOHS surgery is amazing, I am incredibly thankful to all concerned (except stupid original doctor who I refuse to deal with anymore), for what I am sure 40 years ago would have been a complete mess. Donna - it's absolutely fine, seems huge at the time but as they always say about everything - give it time).

Saturday

Strange. When I took the dressing off on Friday I was just delighted with how quick it had started healing, though looked a bit messy on the end. Then started freaking out that it had gone septic, decided to let it dry out a bit and decided once again I was being a drama queen. Over the last few days that yellow has started to go.

Had to go back to the hospital today, and saw the lovely sweetest nurse, the one who held my hand all the way through the surgery - she really was the loveliest lady, I gave her the biggest hug when I left and thought I probably wouldn't see her again. Anyway today the Doctor wasn't available but she was. As soon as she came over I was suddenly overwhelmed and wanted to bawl my eyes out! She said I had healed so well, after the worry of 'such major surgery to your face' that phrase just knocked me over. I think I have been playing it all down a bit, but when I left I just wanted to sob and sob.
Apparently though, that yellow wasn't just a little wet scabbing and maybe I should have gone back on Monday (course what do you do at weekends?). She gave me some antibiotic cream to put on it for the next 5 days.
I saw one of the other people who was having surgery at the same time, no dressing and I had thought he'd had a lot of work as well, but he just had this tiny little inch scab, that was all, I think that was really when it sank in.
And suddenly over the last couple of hours (after the cream) it seems to be settling right down and now... looks like the end might not be quite as good as I was hoping, think there will be some weird dent in it, which would kinda make sense as there was a big hole underneath.
I kinda thought my 3 week sick note was a tiny bit of a skive, now I'm not so sure, I feel very shaky today - silly I know, but I do.